30 years ago, an event took place which changed the lives of many forever.
On a cold December evening, a small group of determined people came together at St. Gregory’s Auditorium in Oshawa. What began as a small volunteer lead support meeting has grown into a vital service in Durham Region; champions helping more than 34,000 individuals each year. Epilepsy Durham Region is now celebrating its 30th anniversary, and is marking its accomplishments.
For so many people impacted by epilepsy prior to 1987, it felt as though a friendly voice, advice, and reassurance were beyond reach. The goal from the outset has been to make Epilepsy Durham Region a beacon of hope; our staff of steadfast advocates fighting for timely diagnosis, medical care, and dignified treatment of those affected. Over the past three decades, Epilepsy Durham Region has paved its way into the community, helping build new services and forge new connections with government agencies with one single minded goal: to improve the quality life for those living with this still under recognized, misunderstood neurological disease.
Road to Success
From its first meeting in December, with a wish list of a typewriter and office supplies, to now striving towards an epilepsy dedicated clinic within its own region, it is clear to see that Epilepsy Durham Region has become the sound leading voice of epilepsy locally.
With focused efforts for epilepsy care in its own community, Epilepsy Durham Region was instrumental in raising funds to support the purchase of an MRI machine for the Oshawa hospital – a key tool used to diagnose epilepsy. Without core funding from the government, nor United Way, Epilepsy Durham Region believes in developing strong partnerships among the community; building and harnessing relationships with its local services to ensure the best possible care for those living with epilepsy. As a result, Epilepsy Durham Region played a vital role in securing safe and affordable public transportation options, implemented a comprehensive epilepsy awareness/first response school program, and was the first agency in Ontario to launch a national epilepsy awareness day – March 26th, Purple Day for Epilepsy Awareness.
In addition, Epilepsy Durham Region executes advocacy and policy change at both a provincial and national level. As a founding committee member for Queen’s Park Epilepsy Action Day, Epilepsy Durham Region works alongside fourteen other agencies across the province to advocate for epilepsy related issues provincially – working collaboratively to disseminate the new standard of care guidelines for people with epilepsy, calling for consistent, quality care across the province, as well as working towards provincial legislation to ensure protection for students with epilepsy. Nationally, Epilepsy Durham Region was fundamental in the development of the first national epilepsy survey (The Impact of Epilepsy on Canadians), and is a long-time standing director of the Canadian Epilepsy Alliance, working with advocates coast to coast to ensure national policy change on drug shortage reporting in Canada.
From the first volunteer meeting in 1987 to now, 2017, Epilepsy Durham Region has remained committed to its mission: promoting independence and optimal quality of life for individuals living with epilepsy and their families, through support, advocacy, and public education.
We’ve turned the corner and it’s a new page.
What does the future hold?
Throughout its journey, Epilepsy Durham Region has become an organization marked by accomplishments that were merely a dream of its founding volunteer members. With all of the successes throughout its history, there is still much more on the horizon – a time when all children will be protected at school, when employers will recognize the value of employing someone with epilepsy, and when the word epilepsy is no longer synonymous with the word fear.
Epilepsy Durham Region is an effervescent grassroots community organization determined to ensure that there is just and equal, timely access to quality care for epilepsy in Durham Region and that as an organization, it will continue to grow and thrive so that no individual living with this disease feels alone nor left behind.